People with lives blighted by blood get their day

The moving testimonies of 22 people whose lives have been blighted by AIDS and hepatitis C started yesterday and will continue…

The moving testimonies of 22 people whose lives have been blighted by AIDS and hepatitis C started yesterday and will continue into next week.

The Irish Haemophilia Society hopes the process of vocalising their feelings of hurt, anger and betrayal will have some cathartic effect for its members who have suffered for almost two decades.

And for the rest of us who can barely begin to imagine the agony, their testimonies will humanise the crucially important work the tribunal is embarking on under its sole member, Judge Alison Lindsay. The tribunal, sitting at the Distillery Building in Church Street, Dublin, is investigating how contaminated blood products came to be administered to haemophiliacs in the State in the late 1970s and 1980s.

The imported products, which brought such dramatic improvements to the lives of people with the inherited blood clotting disorder, also gave them HIV and hepatitis C.

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Those affected by this human disaster want answers to many questions which go to the heart of the operation of the State's health system.

Ms Karen Stephens (20), who told the tribunal yesterday about the death of her haemophiliac father from AIDS, put it simply: "I want to know why he was taken away, why he's not going to be at my wedding."

Mr Raymond Kelly, whose teenage son John died of AIDS in 1994, said he thought he knew what had happened. "He was infected by products brought into this country from America. I want to know who brought them in, who made the decisions and if they knew they were contaminated or possibly contaminated, which I think they did. If they did, then they murdered my son," he said.

Central to the tribunal's investigations will be the role of the Blood Transfusion Service Board (recently renamed the Irish Blood Transfusion Service).

It is expected to ask questions about the adequacy of the criteria the board applied to donor selection, screening and testing, the treatment of the blood products and the board's decision-making process. The tribunal will also investigate the adequacy and timeliness of the response of the Department of Health to the infections. It is expected to ask it to explain how haemophiliacs continued to be infected with HIV after the mid-1980s, despite the availability of treatment to deactivate the virus in blood products. The role of the National Drugs Advisory Board which licenses products will also be examined.

The tribunal will look at the source of the contamination, which was imported blood products produced mainly by US pharmaceutical companies. Legal questions have been raised about the powers of an Irish tribunal to compel US witnesses to give evidence.

The tribunal may apply to a Chicago-based judge for access to files from pharmaceutical companies held in a central documents depository in Florida following litigation by haemophiliacs in the US.

The Irish Haemophilia Society, which has campaigned vigorously for the tribunal, is hopeful it will uncover the complexity of the interactions between hospitals, the blood bank and the Department of Health that allowed so many of its members to die, and continue dying.

Health board officials, doctors and former ministers for health including Dr Rory O'Hanlon are likely to be called to give evidence.

In his testimony yesterday, Mr Kelly was highly critical of the attitude of one senior doctor who treated his son. He described Prof Ian Temperley, director of the National Haemophilia Treatment Centre from 1971 to 1995, as arrogant, dismissive and lacking in humanity. Prof Temperley and several of his colleagues at the centre will give evidence in the coming months.

The Irish Haemophilia Society can take some credit for the establishment of the Lindsay tribunal. It had its origins in the hepatitis C tribunal three years ago which investigated the infection of pregnant women with the Anti-D vaccine. The society unsuccessfully sought full legal representation at that tribunal. It pulled out of it in January 1997 in protest because its terms of reference were too narrow. The Government subsequently agreed to set up the current tribunal to examine the infection of blood products with HIV and hepatitis C.

The society's powerful lobbying also forced the Minister for Health, Mr Micheal Martin, to compromise over its demands for guarantees that its costs for taking part in the tribunal would be covered.

The tribunal's legal team has amassed 500 lever arch files of evidence, each containing about 1,000 documents. That amounts to 1/2 million documents. It is expected that its hearings could last between nine months and a year.

Judge Lindsay's findings will come too late for the 74 haemophiliacs who have already died as a result of their infections. The survivors and their relatives may or may not draw comfort from the tribunal's eventual conclusions. At the very least, they hope, some of the questions that have haunted them for years will finally be answered.